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Author Topic: Post Orgasmic Illness Syndrome (POIS)  (Read 6426993 times)

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6025 on: 12/11/2009 05:58:09 »

Demo, your letter to NORD is great, this gives me some hope. Thanks!


Wonderful, Martin. Thank you! And thank you very much for your help with the project!
« Last Edit: 12/11/2009 06:25:34 by demografx »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6026 on: 12/11/2009 06:10:07 »

I'd like to ask you how to go about increasing free testosterone ...
My doctor is not very keen on giving me testosterone supplementation because he considers my free testosterone is not low enough for it (but it is quite lower than normal still) and even then testosterone patches or injections wouldn't really help free testosterone for long...
So what could I try ? (hopefully something that wont cost me a bundle)


mister_z, below, from an older post of mine, are the results of some free-T results after wearing T-patches for 6 weeks. I have more recent results, which to me aren't important because the patches are working very nicely on my POIS. But if you'd like, I can dig them up for you.


SOME TESTOSTERONE TESTING

Someone here asked me privately for my "free testosterone" testing results (much more was tested), so I thought I'd post it in case anyone else is interested:


Before POIS treatment:
(December 2, '08)
                                    reference range

%FREE T            1.47 %           1.5 - 2.2
FREE T             24.4 pg/mL        35 - 155


After POIS treatment:
(March 2, '09 after about 6 weeks of wearing T-patches)


%FREE T             1.45 %             1.5 - 2.2
FREE T              37.0 pg/mL          35 - 155


Free T jumped 50%, from 24.4 to 37.0.

Endocrinologist expects the numbers to keep increasing through June. If they don't, he'll switch me from Androderm T-patches 10mg daily to a pump gel to increase my testosterone.

mister_z, your doctor says that your free-T is not "low enough" to augment. My endo, who has a very good reputation in the field, agreed with my theory, that even when the T-patches brought me into normal T range and I saw improvement, a 50% increase in T-patches would help POIS dramatically and it did.

I would suggest getting a second opinion.
« Last Edit: 12/11/2009 06:24:28 by demografx »
 

Offline Pablo445

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6027 on: 12/11/2009 18:23:01 »
A bad POIS day today.

Do you ever feel it is "indescribable"? A feeling of anxiety, lack of air, panicky, as if I was stuck in a giant spider web and not succeeding to get out of it. There is no words or metaphor I know for it in any of the 3 languages I pretend to speak. Maybe just plain miserable. The only good thing about it is the fact that it does not last. I always get through it. But while "in it" it really feels miserable. What a waste of time - what a waste of life.

OK I just wanted to rant a little. Nothing positive to contribute right now. Thank you for listening.
 

Offline mister_z

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6028 on: 12/11/2009 18:39:10 »
Before POIS treatment:
(December 2, '08)
                                    reference range
%FREE T            1.47 %           1.5 - 2.2
FREE T             24.4 pg/mL        35 - 155

I have my free testosterone results here; but they are in ng/mL since I am in europe and I don't know how to convert to pg/mL.
So, my results are:
0.89 ng/mL   reference range 1.00 - 3.7
3.09 nmol/L

 

Offline Limejuice

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6029 on: 12/11/2009 19:01:47 »
My free T was also under the reference range in the two T blood tests I took.

Regular T was within the reference range so the doctor would not prescribe a T prescription.
 

Offline CertainlyPOIS

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6030 on: 12/11/2009 19:33:40 »
not pertaning to pois but to the big "O", stroke after orgasm, this is nuts and extremely scary at the same time.
http://current.com/items/89310977_woman-suffers-orgasm-related-stroke-wtf.htm
« Last Edit: 12/11/2009 19:50:50 by CCconfucius »
 

Offline mister_z

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6031 on: 12/11/2009 19:37:03 »
My free T was also under the reference range in the two T blood tests I took.

Regular T was within the reference range so the doctor would not prescribe a T prescription.
Exactly the same case as you...
That's why, since my doctor is being quite inflexible about it, I am looking to "brew my own" with supplements and what not...
 

Offline CertainlyPOIS

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6032 on: 12/11/2009 19:43:29 »
My adavancement in testosterone.
I did a test while in hyper recovery stage.
testerone; 681ng/dl 175-821
FT  19pg/ml no range

Test after three days of orgasm
testosterone; 292ng/dl 241-800
FT         14.1 pg/ml no range.

I am totally confused, there is a big drop in total T and but not really in FT.

I am going to do one more test when supposedly normal hopefully  testerone is low as hell.
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6033 on: 12/11/2009 19:59:01 »

Regular T was within the reference range so the doctor would not prescribe a T prescription. [emphasis mine - demo]



I am going to do one more test when supposedly normal hopefully  testerone is low as hell.



That's why, since my doctor is being quite inflexible about it, I am looking to "brew my own" with supplements and what not...




At first, mine wouldn't prescribe testosterone either, but I insisted emphatically: "I need testosterone for POIS!".("Not for standard testosterone therapy!") In my arguments, I relied on my 'advisor', Petr Weiss, a well-known Czech sexuality researcher who I found through a Larry King CNN interviewee's (he was a sexuality expert/author) "referral to a referral" about POIS. After listening to my story, Weiss told me on the telephone that he firmly believed that MORE testosterone was the answer to my POIS. To my doctors, I also cited Dr Waldinger's study which just had recently been published. And I told them, truthfully, that I'd been suffering badly for decades and I desperately needed relief!

So the doctors both relented.

This was several years back, when I saw a GP and urologist, before my current T-patch treatment with an endo, which is as smooth and wonderful as I could ever hope for. Back then, the GP and urologist both agreed to my demand (no more "requesting"!!), but they insisted that I monitor PSA regularly and re-test T regularly. They stopped me when T went way too high, which was ok with me. They also made me buy the testosterone with the urologist's prescription, then the GP nurse injected me regularly. They put me through hoops, and it was crazy, but I got what I wanted!

NOTE: This is NOT medical advice for anyone to follow! I am not qualified to give medical advice: I am simply describing my own personal experience.
« Last Edit: 13/11/2009 05:04:11 by demografx »
 

Offline Limejuice

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6034 on: 12/11/2009 22:12:29 »
I understand.

I'm reluctant to push to try T for one reason - I don't want to jeopardize my natural production of T.  If supplemented T is not the answer to POIS for me, and in testing this disrupted the natural levels for the rest of my life, I would be....upset.

With only you, Demo, cured that risk is too high for me.  If most the forum was cured with T thatís a different story.
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6035 on: 13/11/2009 02:15:06 »

[if testosterone therapy] disrupted the natural levels for the rest of my life, I would be....upset.


Limejuice, I can't thank you enough for adding that extremely important cautionary note!

Testosterone therapy can, indeed, disrupt the natural production of testosterone. Not always. But enough to be a major concern.

Re-starting natural testosterone production is not guaranteed!

But I was, and am, desperate enough, and at the right age (I have had POIS for somewhere between 30 and 40 years!), where I just don't care: "I want relief and I want it now" was my attitude.

Also, I determined that it's unlikely that I will find another way to increase my insufficient manufacture of testosterone. If others can do it without testosterone replacement therapy (TRT), and have the patience to try different methods...my best wishes!!!

Yes, it is a very critical life decision to make!
« Last Edit: 13/11/2009 02:44:38 by demografx »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6036 on: 13/11/2009 05:11:39 »

A bad POIS day today.

Do you ever feel it is "indescribable"? A feeling of anxiety, lack of air, panicky, as if I was stuck in a giant spider web and not succeeding to get out of it. There is no words or metaphor I know for it in any of the 3 languages I pretend to speak. Maybe just plain miserable. The only good thing about it is the fact that it does not last. I always get through it. But while "in it" it really feels miserable. What a waste of time - what a waste of life.

OK I just wanted to rant a little. Nothing positive to contribute right now. Thank you for listening.


Pablo, please feel free to rant! This whole forum started with John21's rant! ;D (John, forgive me, I'm a twisted man! Blame it on my lifetime of POIS!)

It is such an incredible waste of life. Excellent wording, Pablo.

The one consolation is that some disorders in life NEVER return to normal. Ours always does.
 

Offline mister_z

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6037 on: 13/11/2009 18:53:36 »
Hi,
I managed to get some piracetam from my doctor. I'll try it and report.
 

Offline Dean93

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6038 on: 14/11/2009 02:00:36 »

What a waste of time - what a waste of life.


Excellent wording, Pablo.



Agreed.
 

Offline GoingCrazy

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6039 on: 14/11/2009 04:10:25 »

A bad POIS day today.

Do you ever feel it is "indescribable"? A feeling of anxiety, lack of air, panicky, as if I was stuck in a giant spider web and not succeeding to get out of it. There is no words or metaphor I know for it in any of the 3 languages I pretend to speak. Maybe just plain miserable. The only good thing about it is the fact that it does not last. I always get through it. But while "in it" it really feels miserable. What a waste of time - what a waste of life.

OK I just wanted to rant a little. Nothing positive to contribute right now. Thank you for listening.


Pablo, please feel free to rant! This whole forum started with John21's rant! ;D (John, forgive me, I'm a twisted man! Blame it on my lifetime of POIS!)

It is such an incredible waste of life. Excellent wording, Pablo.

The one consolation is that some disorders in life NEVER return to normal. Ours always does.


Yeah I really don't think anyone should be interrogated for posting anything out of the ordinary or saying something insulting, dumb, crazy, depressing, hyper, ranting, because this is a mental disease and it affects how we act and say stuff... and it absolutely sucks to have,  especially wouldn't blame demo because 30 years is a long time, i've had it for two and dont even now how I've made it through alive.
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6040 on: 14/11/2009 04:18:28 »

Before POIS treatment:
(December 2, '08)
                                    reference range
%FREE T            1.47 %           1.5 - 2.2
FREE T             24.4 pg/mL        35 - 155

I have my free testosterone results here; but they are in ng/mL since I am in europe and I don't know how to convert to pg/mL.

So, my results are:
0.89 ng/mL   reference range 1.00 - 3.7
3.09 nmol/L


This might help to convert:
http://answers.yahoo.com/question/index?qid=20080727171025AADDARl
« Last Edit: 14/11/2009 04:21:35 by demografx »
 

Offline RhythmSpring

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6041 on: 14/11/2009 08:22:27 »
Hey all. What's the deal with cabergoline? Has anyone really tried it out?
 

Offline Z_one

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6042 on: 14/11/2009 12:16:29 »
Dear all,

I kindly urge all POIS sufferers that are active on this forum...and particularly those of you that are living in the US, to seriously bring up this matter to the MEDIA. We have all been speculating going & back forth and turning in circles and back to spirals into vicious circles. Some of us claim to be cured others not....some believe some don't...all that while unfortunately most of us are not even specialists!!....Well yes brain storming, sharing ideas & experiences, and speaking out are all healthy at times....but I think it's time to call it game over,,,,before our lives are over!!

POIS has already taken a very big chunk out of my life and many others....I don't know about you guys but I have thought of suicide myself many times already.....while I know that my faith won't allow me to do it....The thing is I have absolutely no idea wether i will be able to continue my life normally with such a devastating yet by far still underestimated and camouflaged disease. The worst is that people around us don't have a heck about what on earth is wrong with us and they think at times that we are a kind of Zombies! I already got laid off last year due to POIS and I have no idea whether I am ever going to have a mother to my children....

It happens that I work in the advertising field..and I can confidently remind you that the power of MEDIA is HUGE! Thus as to greatly reduce time of research and endless speculations and greatly increase the probability of finding an accurate answer in terms of both cause and cure....we need to STRONGLY  SPEAK OUT TO THE WORLD. A simple youtube video and a forum though both beneficial are not enough at all and with very limited reach...we need much more than that,,,,such as DR. OZ...Larry king....Fox news...You name it....one thing is sure we need to act now...and do it right!

I kindly urge those of you who are in the US to get together write an official letter with all necessary backups, proves, witnesses and send it to the concerned people, media and organizations......The more people are aware the less time we waist and the faster we find a cure to all.....Can you imagine how many concerned people, POIS sufferers, and specialists we can reach through a simple TV show like Dr. Oz for example? We're talking about hundreds of millions of viewers from around the globe that's for sure....

I am currently settled in a third world country so there isn't much I can do from where Iam....but I am definitely ready to help and support whoever is willing to take the initiative for that.....Again the power of Media is greater than you think...so hopefully will be worth my and your efforts ....

Thx for listening & God bless....

« Last Edit: 14/11/2009 15:58:38 by Z_one »
 

Offline mister_z

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6043 on: 14/11/2009 12:50:47 »
Dear all,

I kindly urge all POIS sufferers that are active this forum...and particularly those of you that are living in the US, to seriously bring up this matter to the MEDIA

I agree. I am not in the US however.
 

Offline Pablo445

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6044 on: 14/11/2009 17:29:28 »
I have been reading many posts on this forum. Impressive amount of work and thorough thinking. Congratulations everyone! And a special "thank you" to Demografx who does a great job as a moderator. But I could not find anywhere if someone actually understands the mechanism of POIS? What happens in the neuro-endocrine chain reaction that is different for a POIS sufferer?

I have noticed that for me any stressful event recreates the same problem but with less intensity. If the stressful event happens while I am in POIS it feels like I will die.  It makes it much worse.

Here are 4 opinions from professionals I have talked to. These were casual encounters, I am not their patient:

1. This is basically a clinical depression and for some the symptoms are more related to the sexual physiology. If you fix the depression these symptoms will disappear. My comments: yes I do feel depressed while in POIS but my life is good. I love my life. I have no reasons to be depressed at this time. Besides I do not generally feel depressed outside of POIS.

2. This is part of the burn-out syndrome. You are exhausted and any stress is just bad for you. Although a pleasant experience, orgasm is actually a huge stress in your body from a physiological perspective.  My comments: Yes I do feel burned out and exhausted but my sense is that I feel like that because of POIS - not the other way around. I may be wrong though.

3. From a Oriental doctor. Your kidney energy is completely depleted. This is common nowadays and a well known syndrome in the East. When you are at that point it takes 18 to 36 months to replenish the energy with massage, acupuncture and Chi strengthening herbs. My comments: even if I did study oriental medicine for few years I finally admitted I am a Western civilization white boy and I never quite "got it" with the eastern traditional perspective. But why not? That could be a good approach. But wouldn't I be lacking libido and maybe with an ED problem?

4. An experienced herbalist. Your endocrine/nervous system is depleted. Now is the time to take it easy, read good books, relax by a fireplace, do some light yoga, and take nourishing restorative herbs. It is imperative to avoid as much as possible everything stimulating: such as stimulating herbs, alcohol, coffee, stress,  etc. According to her it takes up to 3 years to recover from this and the big mistake is to try to fix the problem by stimulating the energy. It only makes it worse. My comments: so far I can only agree with her that anything stimulating makes me feel worse afterwards - including coffee, tea, chocolate, alcohol (beer especially), but also a problem at work, a disagreement with someone, even a scary movie will make things worse. It looks like I have become extra sensitive to "everything".

Anyway there are many ideas and perspective about this including literally hundreds of good ideas from this forum. I wish I could have at least a better understanding of the problem. Trying to find a solution when one does not understand the cause is like shooting a rabbit with your eyes close. Or whatever - you get the point!

My mind is not clear yet today so forgive me if my thoughts are somewhat scattered. (if there is one group in the whole world that should be forgiving it has to be this one). I have a good mind normally! :-)l  I am a Mensa member with an actual IQ of 155 but in POIS it feels like 75! It is so frustrating to not being able to count on my own mind. Arrrgh!

Contrary to many others I was not always like that. I had a very active sex life up to 34 years old ( I am 57 now) without any real POIS symptoms. Then I went though a very difficult and stressful event and it all started. Since then it fluctuates. Sometimes it is not a major problem if I have sex every 2 or 3 weeks. I just feel a little bit "edgy" the following 2 days, but nothing else. But at other times I get full blown POIS. It is unclear at this time why this is so. I have noticed I am usually much better in the summer and I get worse in November. Like now. So I will try a therapeutic light treatment to maintain the right level of serotonin - trying to fool my body/mind into believing this is always summer...  I will report of course.

 

Offline GoingCrazy

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6045 on: 14/11/2009 18:07:19 »

Then I went though a very difficult and stressful event and it all started. Since then it fluctuates. Sometimes it is not a major problem if I have sex every 2 or 3 weeks. I just feel a little bit "edgy" the following 2 days, but nothing else. But at other times I get full blown POIS. It is unclear at this time why this is so.


Yes!  I also went through a stressful event which involved me taking coffee, so biological, and so did somebody else here on this forum who claimed that after taking adderal or some drug like that, than felt POIS symptoms... To me this just happened in one day I felt like I lost it after taking coffee for a year.  Does anybogy else have a"stressful" event which seemed to have caused this?  Maybe our bodies are in anti-stimulation mode?

And I am 19, so I believe age isn't a factor.  I am also like you, I can have sex every 2-3 weeks, but only once or else I go off the deep end.
 

Offline GoingCrazy

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6046 on: 14/11/2009 18:13:42 »
I've also noticed a weird reaction when just gasping for air really quickly for about a minute, neither good or bad, anybody else have a similar reaction.  It could just be a normal response
 

Offline Z_one

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6047 on: 14/11/2009 18:27:09 »

 So I will try a therapeutic light treatment to maintain the right level of serotonin - trying to fool my body/mind into believing this is always summer...  I will report of course.



I have been in the Gulf for the past three years,,,where the Sun hits for 99% of the year....and I can assure it did not make any difference in my case,,,,but try if you want....though I don't think light therapy is going to make any difference for many on this forum....

In addition, thx for sharing your consultations and views....but honestly and with all respect , I think the problem is MUCH more than : Adrenal exhaustion, Chi, kidneys, depression & depletion.....Otherwise , half the planet would have been suffers of POIS & specially that more than half of the earth's population live in poverty and thus through extreme daily stress....

Just a thought....
« Last Edit: 14/11/2009 18:54:11 by Z_one »
 

Offline exponent

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6048 on: 14/11/2009 23:00:36 »
Hi, this will be my first post, just wanting to describe this syndrome as it applies to me right now. I have not read every page on this topic, just the first couple and last couple, you've gotten a lot of feedback but not much in terms of solid treatment breakthrough.

I'm 19, and a bodybuilder. Currently in my physical training I am bulking up, I'm at 205 lbs and am mostly lean. My sex life is variable at the moment, but recently (past few months or so) I have been extremely lethargic after ejaculating. Just this morning I went to the gym for my normal saturday shoulder workout and had a couple of emissions this morning beforehand. Merely the routine of going to the gym forced me to go, despite this lack of energy, but my strength was quite noticeably diminished during my first exercise (military press) and in the following exercises, for the first time my body began to ache in that "flu like" sense. Even after cutting the workout short and returning home I continued the aching, in my bones and joints.

Normally I don't experience the aching, but the cognitive disability in my worst enemy. It acts upon me in a way that many of you may not share. Whenever I'm suffering from it I feel like I absolutely cannot look someone in the eye. I just avoid their faces all together. I do experience some fading of vision as well. All of my symptoms usually fade within 2 days at most, and I avoid masturbating and sex most of the time so it isn't frequent, I hope to be able to act out my desires more fully, avoiding isn't good enough anymore.

In my own thoughts, before discovering this site I noticed  a few things, One is that compared to times before my affliction with these symptoms I have significantly less semen with each emission, even if weeks have passed between them. I feel like my body may be pulling resources from other important functions to help produce sperm because I may be deficient in something.

another is that carbohydrate consumption does have a good affect on the syndrome, elevating mood, but at this point in my training I'm eating so many carbs already that I can't afford to eat but so many more without gaining necessary amounts of fat.

the main thing that I'm looking at is starting supplementing additional nutrients specifically for sperm production, to see if my body is spared when there is a surplus. So B vitamins, and Zinc are on my list, but I don't know what else.

I don't know, thoughts?
 

Offline ophicus1213

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6049 on: 15/11/2009 00:55:21 »
This may help us in our quest but i can rememeber the exact night everything changed for me.  It was november of 1999, and I chose to "O"twice in a row.  The second session was very painful, because i was sensitive but i continued anyway.  After the second "O" it felt like something had seriously gone wrong.  I was in a state of panic, and I felt trapped.  Waves of sensation were flowing all over my body, and it continued all night long, i could not sleep.  I felt as if i was floating on water.  The state i lived in for the next day just felt wrong, and uncomfortable.  On the second day I awoke feeling completly recovered.  I stayed that way for an entire week.  For some reason I did it again and even without an "o" my body went back into the same shock, and I have lived that way perpetually for ten years.  I do however remember a similar feeling as a child when I had consumed nearly five cups of cofee.  Cofee which contains caffiene, which plays on dopamine and prolactin.  Currently I have disbanded my experiments with anihistamines, and methionine, having dwindling sucess.  It seems that every time I have found something that may help, it helps for only a few days and stops.  My last blood test showed extremely high blood sugar, so my focus is now on cortisol. 
 

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6049 on: 15/11/2009 00:55:21 »

 

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